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Autres associations

Egmos

Association de greffés de l’Hôpital Saint Louis à Paris Site internet : www.egmos.org

Alliance Maladie rares

Site internet : www.alliance-maladies-rares.org

Collectif qui rassemble plus de 190 associations de malades concernés par une maladie dite rare. Elle représente environ 2 000 pathologies rares et 2 millions de malades atteints de maladies orphelines.

La mission de l’Alliance Maladies Rares est de susciter, de développer, sur les questions communes aux maladies rares et aux handicaps rares, toutes actions de recherche, d’entraide, d’information, de formation et de revendication, pour faire connaître et reconnaître les maladies rares auprès du public et des pouvoirs publics, améliorer la qualité de vie et l’espérance de vie ces personnes par l’accès à l’information, au diagnostic, aux soins, aux droits, à la prise en charge et à l’insertion et enfin promouvoir la recherche scientifique et clinique, donner l’espoir de guérison.

Orphanet

Site internet : www.orpha.net

Cette structure a pour but d’améliorer la qualité des soins médicaux pour les Maladies Rares et de fournir des services adaptés à la communauté des maladies rares.

Maladies Rares Info Services

Site internet : www.maladiesraresinfo.org

Dans le respect de l’anonymat, Maladies Rares Info Services répond à vos demandes d’information sur une maladie rare ou orpheline, vous oriente vers des consultations spécialisées, vers les associations de malades....

Associations proposant aux enfants souffrant de maladies graves de réaliser des rêves ou relever des défis inédits

Coeur des Anges (contact Isabelle Lesage)

Site internet : www.coeurdesanges.com

A chacun son Everest (Christine Janin)

Site internet : www.achacunsoneverest.com

Association Française de l’Atrésie de l’Oesophage

Site internet : www.afao.asso.fr

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